Where to start... I am very joyful, excited, happy, sad, confused, scared out of my mind, concerned and overwhelmed. My 5 year old grandson who was born with Cerebral Palsy has just been approved for selective dorsal rhizotomy (SDR) surgery. Everything is moving so fast. His appointment with world renowned surgeon Dr. Park in St. Louis was on September 26th. The surgeon said that if Jaxson doesn't have the surgery he will be in a wheelchair for his entire life and he could almost guarantee it. Apparently, his muscles will deteriorate because of his extreme spasticity. So, it was a no-brainer for my daughter and her husband to move forward with the surgery. The Dr. scheduled it for November 4th-this year!
This will or rather can be life changing for my grandson and our family. Though Dr. Park does not feel that Jaxson will ever walk independently outside, he does feel that he may be able to walk with arm crutches and that will be amazing!! He will gain some independence and be able to sit upright and do many of the things he enjoys like playing Mario Kart 8 on his Nintendo Wii. With less spasticity he may be able to write better and eat better with a folk. Some of the things that we take for granted that come so easily to us are great efforts for Jaxson. He is the light of my life and I will do whatever I can to help make his life more enjoyable and easy.
After the surgery is when the real work for Jaxson will begin. He will have to re learn to move his body and muscles. Our entire family has to help out as there is too much to do and it is can be overwhelming. We are trying to work out our schedules and move things around so that he can be the center of our focus since he will need support from each and every one of us. Jaxson does not fully understand what the Dr's are going to do for/or to him, nor does he have any idea of the enormity of work and pain that is ahead. It breaks my heart to think about it.
This year he was mainstreamed into Kindergarten as he is a very bright young boy. He is eager to learn and he is inquisitive! During his many months of post-op therapies he will have to miss months of school and homeschooling is something that we are looking into. Right now he is very popular at school, the other kids love him and fight over who is going to sit next to Jaxson in the lunchroom. I hope that he doesn't have to miss too much or get behind. The socialization that he has had in school has been wonderful. He wakes up every morning excited to see his friends and teachers.
So, even with all of the struggles ahead and the fear my family and I have, the one thing that we hold on to is hope...
First of all, thank you all for your very kind well wishes for Jaxson. Please know that while I would like to answer each and every email separately and explain everything I just can't- it has become overwhelming--in a good way :) . Each time I read a comment or answer an email it makes my heart happy that so many of you care so I wanted to give everyone an update.
Jaxson's surgery went very well. Dr. Park said that his spasticity should subside considerably, it has, however the physical therapy needed to strengthen his now limp legs is ongoing and extensive. He works daily to strengthen his core, his limbs and his soul! He is a trooper; he has worked through a lot of pain but most of it is going away. He will be in a NJ rehab facility until Dec. 10th and my family and I will take turns staying with him around the clock. They think that he may start having spasms and severe pain in his back-apparently it is common but right now it only hurts a bit. The scar on his back is healing nicely; it is large and quite raised, I have been told that that too is normal.
During Jaxson's physical therapy he has been walking on his walker-he is up to 150 steps! In addition to physical therapy he has occupational therapy, recreational therapy, speech therapy and is scheduled to begin swim therapy next week. He also has an hour of school each day though I don't think that that is enough so we continue to "play school" together, he just loves it! I pretend that I am his school teacher and all of his stuffed animals are his classmates. He of course is the smartest one in the class and I tell him that over and over again :) Through all of this Jaxson has not lost his smile and for that I feel truly blessed. Our hope as a family is that one day Jaxson will be able to walk and gain some independence BUT mostly it is that he has a happy and healthy life.
Thank you all so much for your kindness and support,
Well, we had hoped that Jaxson was not going to need a second surgery however, after sending video tapes and measurements to Dr. Park, he has decided that the heel cord surgery will benefit Jaxson. I am again, worried sick but I know that he will be in good hands and I have complete faith in Dr. Park's abilities. I also want every effort to be made to help Jaxson have a brighter future.
A special heartfelt thank you to everyone that has commented and shown their support. Our local PBA has even gotten involved. I can't tell you how nice it is to see our local community as well as people from around the world reaching out to help Jaxson. Anytime that I get afraid or worried or even down in the dumps, I remember how lucky we are and I remember the sign below that my daughter shared with me after her first visit to St. Louis Children's Hospital.
This was a sign that my daughter saw when she first walked through the doors at the St. Louis Children's Hospital, I love it! It is so inspirational and I keep it tucked away in my heart. Below are my two sunshines. Jaxson and Tanner. My daughter captured this image of the two boys when Jaxson was in rehab, she used her iphone.
We hope to bring awareness to other families that have no idea that this surgery is available and that some insurance policies cover the surgery. We had to find this information out on our own, not one doctor or therapist along the way even mentioned it to us. This is not a cure for CP, but it makes a great difference in the quality of the lives of those who have had the procedure.
Fingers crossed, wish us luck!
It has been about a month and a half since Jaxson's 2nd surgery. After having the second surgery Jaxson drags his right foot and it is slightly positioned outward when he walks. I didn't notice him doing that as much before the second surgery. The doctors and therapists say it is because his muscles are so weak. I remain hopeful. He has had two major surgeries back-to back and he is a small child so I do need to take all of that into consideration. Still, deep in my heart, I want so bad for him to walk around like all the other kids. I know that I need to be patient and that he needs to recover and re-gain strength in his legs.
Jaxson continues with therapy almost every single day, including swim therapy. In addition to his regular therapy sessions at Children's Specialized 3x a week he has a therapist that comes to the house twice a week. In school he has additional physical therapies 3x a week and speech therapy once a week. He is gaining strength and working hard daily. Sometimes, I fear he is working too hard and he does not have any time to be a kid. My daughter set up his first play date after school-I'm so excited for him. Jaxson is very shy, I think in part because of his CP (Cerebral Palsy). He is also falling behind in school, because of his physical needs, loss of school during the surgeries, etc.. AND we found out he was having trouble seeing, on February 8th he was fitted for glasses.
I do want to add that my family and I feel extremely blessed. Sometimes when things seem bad we remember some of the other children that we have met along the way and we count our blessings. Jaxson is a sweet, lovable, happy, well adjusted, 6 year old with love and happiness in his heart. He makes us all so proud everyday. We love him to pieces and he knows it.
After his first surgery and rehabilitation time Jaxson came home-my daughter wrote this below.
So happy to have his brother home finally!! It's been a very challenging 5 weeks for us ALL but we made it and are stronger as a family for it. Jaxson you are my hero.....a hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles ~ Christopher Reeve. Some people never meet their heroes I gave birth to mine. Minutes after being home Jaxson climbed the stairs in our house to his room...I honestly didn't think that he would be able to do that his first day home but all of his hard work and strength has really paid off!!!! So proud!
Younger brother Tanner is happy to have Jaxson home again.
Jaxson wears night braces, my daughter wrote this below:
Every night he wears two different braces to bed, they are for his hamstrings and heel cords to get the best and longest stretches. The time it takes to get them on and the Velcro that seems to always be stuck to one another is enough to make someone crazy....but not him he keeps smiling and is so proud of himself for wearing them all night long! He literally is rolling off his bed in the middle of the night because he is trying to either lay on his side or belly...the braces won't let him move his bottom half so you can imagine how difficult it is to wear these. He will wear these for at least 9 more months.
After his 2nd surgery my daughter wrote this:
Out of surgery and recovery and getting settled into his room! Surgeon said the surgery was a success and that his muscles were easily corrected. He believes this will be the icing on the cake for Jaxson and help him even more with his balance and coordination. He also said that Jax will now have a heel to toe with straight leg walking gait like all of us. We are so excited for his future and to see how all his hard work and suffering will pay off! Thank you all for your continued support and love, it has truly helped us through some of the hardest times.
The other night Jaxson and Tanner had their first sleep-over together. They had layers of bed covers on the floor with blankets, pillows and bedtime stories- told by yours truly. They share a room but have never slept on the same bed so having all the blankets on the floor was a fun treat for them both. Throughout all of this Jaxson has a surprisingly great outlook on everything. He is always happy and rolls with the punches, never really complaining about anything. It's amazing, no...he is amazing!
I want to thank everyone for your kind support of Jaxson over the past year. He has been making great progress and I would like to take a moment here and brag like a proud grandma. Jaxson won his first swim event!! I say first because he is like a fish in the water and we want to encourage that with additional swim lessons and swim therapy. Ok, back to his big win-he raced against other children his age (none with disabilities), he had an aid that helped to turn him over so that he could take a few breaths, other than that he beat them all by a mile-well, maybe just a few feet!!! Tears of joy ran down my face the first time I saw the video. I was away when he raced but luckily my daughter video taped it.
Jaxson's progress has been a long, slow, drawn out process but it has been progress and every bit of it has been worth the two surgeries. His muscles are developing and he has had a huge growth spurt. This year he started mainstream first grade and has a few of his friends from kindergarten in his class. He enjoys school and is happy every day that he gets off the bus. Jaxson is doing great in math and he is using a tablet (instead of writing as it is laborious for him to write) so that he can keep up with the other kids. My daughter hired a tutor for extra help to make sure he is keeping up.
Right now Jaxson uses his walker and can walk about 2000 steps at a time, however at school he uses a wheelchair. I am against the use of the wheelchair but the school feels that he takes too much time getting from one class to another. I don't want him lagging behind so I guess it is ok, not great, but ok. My main concern is once in a wheelchair always in a wheelchair... If I sound more like his mother than grandmother it is only because I love him so dearly but I am 100% his grandmother as his mother and father set the boundaries and have to be tough on him -it's my job to spoil him and I intend to do so! During all of this we (when I say we, I mean my daughter, her husband and I) are never once forgetting Tanner (his younger brother), he gets loads of attention and is about the cutest thing in the world. He just learned to swim and is fully potty trained and very proud of it!
We have been researching Stem Cell Therapy and its benefits for children with CP. My daughter made a conference call with a Dr. in California to set up Jaxson's first Stem Cell Therapy. My fingers are crossed, she has been following a young girl that presents like Jaxson and she has done extremely well with the therapies; each time improving just a bit. I'll be in Kenya during the conference call but I am hopeful that she can schedule the first treatment when I am home so that I can be there. Fingers crossed!
Through this all, my family feels truly blessed. During Jaxson's hospital stays we have seen many children that have a lot less hope than Jaxson. And believe me, we count our lucky stars daily. One of the things that we can't help but worry about is Jaxson gaining acceptance from his classmates. The thought of someone making fun of him for the challenges he faces breaks my heart. Please if you have children and have not already spoken to them--make them aware that everyone is different and everyone is good at something.
Thanks and hugs, denise
As some of you may remember my daughter and I took Jaxson to St. Louis to see his surgeon, Dr. Park this August (2018)
We got some great news, the doctor said that Jaxson could and should start walking with his canes and he feels that the AFO’s (leg braces) that Jaxson has been wearing for as long as we can remember can come off! Tears of joy mixed with a hint of concern rolled down our faces as we watched Jaxson’s face light up like a Christmas tree when he understood what Dr. Park was saying. No more braces! For Jaxson and any other 7 year old that was huge, as I am sure they have always been uncomfortable and they have made him feel different from the other children.
With that great news came some hard core truths. Dr. Park said that studies have shown that children that can’t transition out of their “walkers” by the time they are 10 years old will most likely spend the rest of their life in a wheelchair. He said he needs to start walking on his own with his arm canes, NOW.
Wow, I can’t tell you how sick my stomach was at that moment when we were hit with that reality. Before we left to come to St. Louis I had been working with Jaxson trying to get him to walk with his canes. It was next to impossible, as he could not stand up independently at all, let alone walk with them. He needed me to move both his legs and arms.
One of the reasons we went to St. Louis was because we signed Jaxson up for a series of intense therapy sessions with the physical therapists that work closely with Dr. Park. They worked with Jaxson daily and gave us lots of pointers on how we can help Jaxson moving forward. By the time we left the hospital Jaxson was making great progress. He walked long distances with his canes with assistance but not like before-he was on a mission to keep those braces off his feet.
Jaxson was not the only one that found inspiration, strength and renewed energy to work harder than ever; my daughter, son-in-law, and I were also committed to keeping Jaxson out of that wheelchair. Our entire family has rallied together to make sure that Jaxson has plenty of time working with his canes. We are also in the process of finding him a personal therapist that will help him 3 times a week. Jaxson used to go to therapy sessions at a center but we now realize that they are not equipped to help Jaxson with his journey. And it is his journey, he has to do most of this but at least we are now informed and our family will do whatever we to can to support and help him no matter what the future holds. But once again we have hope….
Jaxson with family in tow, just returned home from a week long intensive therapy in Houston Texas. This week long therapy session has been designed by Mike Poole from Walk This Way, USA. It is a specialized strength and conditioning program targeted to children with Cerebral Palsy.
Jaxson did very well at the therapy sessions and we got a lot of good ideas to go home with. We are in the process of transforming my daughter’s basement into a home gym for Jaxson. He wants to call it Jaxson’s Jungle and start a YouTube page so that he can teach other kids what he has learned. I think if it keeps him motivated-then it will be a good thing. That seems to be the hardest thing— keeping him motivated. Jaxson just wants to be a normal kid with lots of free time to play but all of his time is accounted for. It’s a hard balance to keep. But my daughter and her husband do a great job keeping “the normal” in Jaxson’s life.
Jaxson works hard with his canes and we struggle to make sure he gets enough time daily to work with his canes. He needs to be out of his walker by the age of 10 (according to Dr. Park) and Jaxson is now 8 1/2, so time is running out. His biggest issue is his core. He does so many strengthening exercises and believe me this kid is ripped but his core is still so weak. His body cannot control his movements.
Jaxson will start 3rd grade in a few days and he is really excited to meet new friends and to see his old friends that he has missed over the summer. He attended day camp with his younger brother Tanner (Tanner will start Kindergarten at the same school) and some of their buddies. He did well and enjoyed his time there. The camp staff was very nice and helpful. Their motto-BE KIND, I love it!